Zorgpad Syndroom van Leigh - page 3

Mei 2016 3
Inhoudsopgave
1 Voorwoord 4
1.1 Expertisecentrum.................................................................................................................... 4
1.2 Patiëntenverenigingen ............................................................................................................ 5
1.3 Leeswijzer ............................................................................................................................... 5
2 Zorgpad Syndroom van Leigh 6
2.1 Ziektebeschrijving Syndroom van Leigh .................................................................................. 6
2.2 Presentatie.............................................................................................................................. 7
2.3 Diagnostiek ............................................................................................................................. 9
2.4 Behandeling .......................................................................................................................... 15
3 Begeleiding – Kinderen 18
3.1 Patiënt en/of ouders ............................................................................................................. 18
3.2 Casemanager......................................................................................................................... 19
3.3 Kinderneuroloog ................................................................................................................... 19
3.4 Vaste medebehandelaren ..................................................................................................... 22
3.6 Overige betrokken zorgverleners .......................................................................................... 25
4 Begeleiding – Volwassenen 27
5 Kwaliteitsindicatoren 28
6 Disclaimer 29
7 Literatuurlijst 30